Posted in EHCP Process, Emotions

Underfunded or poor use of funds?

I want to start this post by saying that for the first time in a very long time, I am writing this on my mobile so be prepared for more spelling mistakes than normal. Part of my process is to sit at my laptop and write… I don’t know why. It makes my thoughts feel more official and organised and when I’m on my phone it feels like I’m just ranting to my friends via message but maybe that isn’t a bad thing so here goes nothing.

I spoke to another parent today who’s child seems neutologically very similar to William. This family are having to take the local authority to court to ensure their child’s needs are met and it made me think about how many other parents are going through this right now. Thankfully I didn’t have to go to court but we are still schoolless. How many children of school age are without adequate education? How many children are stuck with inadequate education?

How can the local authority knowing do this? Spend funds that could help our children on fighting parents who just want the best or at least the bare minimum for their children? Or do we pay for that in our taxes? The money spent on fighting parents could get more children into the right schools, the right level of 1 to 1 support. I am a firm believer that the SEND departments are massively under funded and when my solicitor asked if I wanted to persue compensation, I firmly said no. Why would I want to take money from an already underfunded department? But what are they doing with the funds they have? Are they using it in the best way possible? I don’t think so! 💸

I’m worried about whats to come for us as it gets closer and closer to William’s loose start date of April/May. What If they name a school that isn’t suitable for William? I won’t send William to just any school. I have to be sure  it will meet his needs, I have one in mind but would happily accept a suitable substitute but what if they don’t offer one. William will be schoolless and too old to continue to attend nursery and thats a real fear I have. I could attempt to home school him and although I would give it a bloody good go, I don’t have the resources available to me nor any idea where to start. We try educational play with alphabet and numerical flashcards and use many sensory items but it’s not the same as school and I’m not cut out to be a teacher and these are pivotal years of his education. I chase our caseworker every month after the monthly allocation meeting to be met with the same replies. ‘No update yet, we will be in touch when there is’ I’m worried about the transition time and if there will even be any. 🤷🏼‍♀️ Both myself and Williams dad may need to take time off work but we can’t prepare until the local authority let us know more details and as someone who needs a list to organise her lists, the lack of being able to prepare weighs heavy on me and my mental health. Some days the panic takes over and all I can focus on is what I don’t know like how much school uniform is going to cost me, will William be able to scope wearing it? How will he get to school? No one will discuss transport with me until he has a named school but what time would it come? Will Williams dad need to be here whilst I work to hand him over? Do I need to provide a car sear? What if it doesn’t arrive? Will he be on a bus or with a PA? I should be happy because I’m in a much better situation than other parents but I’m not. I won’t be until William is settled in a school that can meet his needs

I re-read my post from February last year, school allocations. It broke my heart all over again… almost as if I was sat in the bath receiving that phone call from Elaine to tell me William wasn’t even on the list of allocations all over again. This was the day I genuinely didn’t think I could keep fighting. Couldn’t keep getting knocked down. The 15th February 2021 and I just wanted to stay down. I shouted and cried and broke things! Why wasn’t my kid important? Why didn’t we matter? It took me a while but I got up and I fought, with alot of help and advice 🥰 and we actually got somewhere. Not where we we want to be but almost there.

I almost let them bully me into sending William to a school I knew couldn’t meet his needs. I even met head teachers who were non committal about whether they could or couldb’t support him. They expected me to name them on his EHCP without a commitment and thankfully I just couldn’t do it. The local authority expected me to and pushed me to, making me believe it was the only option for us. That’s not right, that’s not ethical and it was most definitely not what was right for William but it was what the local authority deemed right for them. They should have been putting William first from the moment he was on their radar but they didn’t.

I received a SAR in regard to Williams education and when I looked through it, it broke my heart. Not once did it refer to Williams best interests and meeting his needs, only after the point I gained legal representation did they seem to change their agenda and that’s wrong! Some parents can’t afford legal help or aren’t entitled to legal aid, it shouldn’t come down to money in order to get our children the educational they deserve! The education they need and are entitled to!

I recently read the ofsted report on the Hull services from December 2019 and its a damning read. Here are a few highlights or more accurately lowlights…

There was too little involvement of families in decision making about the services and support they need and insufficient awareness of the resources and support available to them in the local area.

There was poor self-evaluation of service quality and insufficiently focused improvement planning to facilitate better provision and outcomes for children and young people with SEND.

There was a lack of an effective strategy for jointly commissioning services across education, health and social care.

Here’s the full report if you wish to read it.

As always I will keep you all updated with our journey to education but if any of you have your own stories you wish to share please reach out either via our social media pages or our reach out page.

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Posted in Emotions

Tell me lies, tell me sweet little lies

Today’s topic of conversation inner turmoil is trust. I’m not sure why but its something thats been occupying my mind a lot recently and I thought that by writing about it, it may stop running around in my head rent free.

I think we have spoken about this before in many other posts but here we go again… Trust is a huge thing for me and many of you will know why, or at least have suspicions. I value truth above all else and it is something I live by, in many cases I can be too honest and it makes me a human version of marmite; people with either find it refreshing or irritating, love it or hate it, it’s just part of who I am unless it comes to William, I sometimes find it hard being honest when I need help and will just keep going, pretending all is fine and then will write on here about how hard it can be and people will reach out, why didn’t I ask for help? Sometimes it’s a pride thing, sometimes I think that if another mom can do it why can’t I, even though our children are very different. Any way I think I’m digressing from the subject at hand here…

In any relationship trust is one of the most important thigs whether it’s the trust between partners, the trust you have in the professionals and babysitters who look after your children, the trust between an employee and their employer and the trust your child has in you. Trust is something we have in many different variations, I have a trust in the battery on my laptop, that it won’t die on me whilst I am writing this. (Currently on 26% 🔋) My main thoughts today are what we do when that trust is broken, how we can overcome it? If we can overcome it? If my battery dies, I wont trust it to last next time its low and would bring my charger downstairs but what if it’s a person that breaks that trust?

A wise person told me that once trust is broken, any form of relationship will never be the same again. That’s not to say that things can’t be good again but just not the same and we can either accept that and try to move passed it or we can write off that person and make sure we are more guarded with the next.

Protecting yourself and your children from the pain that comes with deceit is important but is it possible to shield yourself too much? We have been let down by so many medical services, local authority departments and people that I wonder if we should ever trust someone in what they say again.

Trust isn’t just about lies but about the breaking of promises or failing do something you should do.

  • ‘The referral has gone through, Mrs Buckley’
  • ‘I know what I’m doing’
  • ‘I love you’
  • ‘He on the list of allocations Marie, I made sure of it’
  • ‘Your arse doesn’t look fat in those leggings’
  • ‘I’m not having an affair’
  • ‘It’s just a little needle, it doesn’t hurt’
  • ‘William will grow out of it’
  • ‘I’m ok’
  • ‘It’s fine’
  • ‘I’ve chased the referral’
  • ‘I understand how hard things are for you and I will help’
  • ‘I’ve just been for a drive’
  • ‘I can do it on my own’

And my favourite silent lie… a smile 🙂.

The list is pretty much endless, but how many lies is too many? When do you just walk away? When do you change doctors? Or professionals or cut people out that you can’t trust?

There are a few people in my life that I have implicitly trusted, even fewer in William’s life and it seems that I don’t really learn my lesson. I have misplaced faith in people that talk the talk but never back it up with anything of substance. People that tell me they are doing one thing but are really doing another and just try to placate me to stop an argument (that the truth would have prevented), to stop me legal action, or to mislead me into forgetting about my rights or prevent official complaints. I think the last few years has taught me to question everything and everyone, and I’m not sure if that’s the right thing to do.
Give people the opportunity to lie to you and if they don’t, it tells you something about their character or even their professional ethics but if they do… you have to make a decision. Was it a lie? Was it broken promise or a failure of duty? What ramifications did it have? Can you trust that person to continue in their usual capacity in your lives?

Can you forget about it? Can trust ever be fully rebuilt?

I guess that’s the big questions isn’t it?

P.s, My battery is at 9%

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